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OfflineSulfurshelfsean
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Does anyone have heat related seizures? * 1
    #28253254 - 03/29/23 04:29 PM (9 months, 25 days ago)

My girl of almost two years has seizures. I've only witnessed two so far, but I've come home and she's hit her head, when we first got together her nose was still bruised from breaking it after hitting herself during contractions from a big one.

She never knew what was triggering them and I noticed it happens over and over again after a hot bath/ in the bathroom while it's hot. I get her CBD gummies and she smokes weed now and it seems they never happen on days that she has some kind of cannabinoids in her.

She just had one that scared the fuck out of me. Near the top of the steps. Blowing weed smoke in her face and letting a cherries joint sit under her nose actually seems to pull her out quite fast.

I'm just wondering if anyone on here has any experience with this type of seizure. What kind of long term meds people usually take for it etc....

It's been pretty preventable, as she's gone from having multiple seizures in a month to maybe once or twice a year. Id like to find a source for a good nasal CBD but I can't find any that are highly micronized for a good absorption rate for emergency.


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OfflineNichrome
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Re: Does anyone have heat related seizures? [Re: Sulfurshelfsean] * 2
    #28285411 - 04/19/23 01:30 PM (9 months, 5 days ago)

Yeah that's a deep one. I feel for you both. I have seizures of all types. I can't recall an occasion where they were brought on by heat specifically but I can say that heat was a main contributing factor for more than a few. Any type of stimulation is a contributing factor for me though. Heat is a very stimulating experience. Cold will on it's own bring them out of me.

What I can say is that during a seizure I don't want anybody "doing" anything to me other than preventing me from injury or only the gentle embrace of very close loved ones, my daily people. No smoke, no sounds or speaking, nothing to comprehend,  nothing but calm. There is no form of mechanical stimulation in those ways that can help and most just prolong or intensify seizures in me.  If you can draw the blinds, turn off sounds, and let the seizure run it's course in a physically safe way that is best. There is nothing that brings someone out of a seizure that is happening already to my knowledge that is reliable or safe. Any action is stimulation and any stimulation has potential to prolong or worsen an active seizure.

For me cannabis is a wonderful preventative and great afterwords but in no way beneficial during a seizure. It's primarily the thc that helps me too. This is something also confirmed by my doctor and discussed at length between he and I. CBD is mostly useful for me as an enhancement to the recycling and activity of thc in my body. Too much cbd and not enough or no thc is a recipe for more frequent seizures not less. I don't consume any cbd other than what is present in typical high thc bud. The terpene profile also has a strong effect. Certain varieties of cannabis make my seizures much more frequent, and some strains are wonderful at keeping them to the absolute minimum. Cannabis is medicine but it is also magic and it takes forming a relationship with the plant to really get it's goodness to appear. I think finding "products" to fill that niche might be a full on nightmare.

Stairs, bathtubs, machinery, pools, railroad tracks, roadways, all the dangerous places you wouldn't leave a toddler, are places to pay attention. Once you identify triggers and learn to cope, independence and all that will return to close to normal. Normalcy and lack of seizures is possible and doable. They are complicated things and there are always a lot of contributing factors. Diet, emotional state, sights, sounds, math, geometry, smells, memories, pain, repetition, stresses etc etc etc.

For me it's like the straw that broke the camels back. It builds up and once it is released, the experience that unfolds is associated with all the parts of my brain that were toggled in the buildup process. Hard to explain.

You can find ways to prevent them and ways to lessen the intensity and duration.


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Better to be deprived of food for three days, than tea for one.


Freedom is not the right to do as you please, but the liberty to do as you should. ~Emerson


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OfflineSulfurshelfsean
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Re: Does anyone have heat related seizures? [Re: Nichrome]
    #28285674 - 04/19/23 04:11 PM (9 months, 4 days ago)

Quote:

Nichrome said:
Yeah that's a deep one. I feel for you both. I have seizures of all types. I can't recall an occasion where they were brought on by heat specifically but I can say that heat was a main contributing factor for more than a few. Any type of stimulation is a contributing factor for me though. Heat is a very stimulating experience. Cold will on it's own bring them out of me.

What I can say is that during a seizure I don't want anybody "doing" anything to me other than preventing me from injury or only the gentle embrace of very close loved ones, my daily people. No smoke, no sounds or speaking, nothing to comprehend,  nothing but calm. There is no form of mechanical stimulation in those ways that can help and most just prolong or intensify seizures in me.  If you can draw the blinds, turn off sounds, and let the seizure run it's course in a physically safe way that is best. There is nothing that brings someone out of a seizure that is happening already to my knowledge that is reliable or safe. Any action is stimulation and any stimulation has potential to prolong or worsen an active seizure.

For me cannabis is a wonderful preventative and great afterwords but in no way beneficial during a seizure. It's primarily the thc that helps me too. This is something also confirmed by my doctor and discussed at length between he and I. CBD is mostly useful for me as an enhancement to the recycling and activity of thc in my body. Too much cbd and not enough or no thc is a recipe for more frequent seizures not less. I don't consume any cbd other than what is present in typical high thc bud. The terpene profile also has a strong effect. Certain varieties of cannabis make my seizures much more frequent, and some strains are wonderful at keeping them to the absolute minimum. Cannabis is medicine but it is also magic and it takes forming a relationship with the plant to really get it's goodness to appear. I think finding "products" to fill that niche might be a full on nightmare.

Stairs, bathtubs, machinery, pools, railroad tracks, roadways, all the dangerous places you wouldn't leave a toddler, are places to pay attention. Once you identify triggers and learn to cope, independence and all that will return to close to normal. Normalcy and lack of seizures is possible and doable. They are complicated things and there are always a lot of contributing factors. Diet, emotional state, sights, sounds, math, geometry, smells, memories, pain, repetition, stresses etc etc etc.

For me it's like the straw that broke the camels back. It builds up and once it is released, the experience that unfolds is associated with all the parts of my brain that were toggled in the buildup process. Hard to explain.

You can find ways to prevent them and ways to lessen the intensity and duration.



CBD and smoking weed has helped her immensely
She's gone from upwards of ten seizures in a month to one every couple months.
Nano emulsified CBD has been shown to arrest some seizures mid seizure.
She doesn't smoke a lot or teat alor



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Everything is better when it is done ON TOP OF A MOUNTAIN!


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Invisiblebirdeatingspider
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Re: Does anyone have heat related seizures? [Re: Sulfurshelfsean] * 3
    #28292834 - 04/24/23 11:18 AM (9 months, 2 hours ago)

I went my whole life seizure free until I hit 30. Such life has been a nightmare since. I do belong to a group and there seems to be an overwhelming number of women who develop seizure disorders in their mid 20s to 30s- with no known cause.

Personally, finding a top notch neurologist, having multiple CTs, MRIs, EEGs, sleep studies, and living through the disorder and complications, has been most helpful. It's tough, each episode has been a learning experience,  but knowing that the next one could be my last is horrifying.
Currently, I am maxed out on the only two antiseizure meds that keep me from multiple tonic clinics per month.
The studies have identified that my seizures come from my amygdala,  the fear center of the brain. With this disorder I have now been blessed with crippling anxiety, agoraphobia,  and it complicates everything.
I have had multiple concussions, broke and had my nose reset twice, this last time I said fuck it. Also have permanent cognitive issues, memory impairment, vision loss in one eye. After so many, going to the hospital is useless. Have had my driver's license revoked three times now, was about to get it back when this last biggie occurred.

As far as EMTs and hospital visits, once someone is diagnosed with a seizure disorder, you only really need to go if the seizure (tonic clonic, which it sounds like hers are) lasts more than four minutes. Or if significant injury occurs.

The protocol for what to do if you see someone having a tonic clonic (formally grand mal) seizure- roll them on their side, this is in case of aspiration, so they don't choke on what comes out.
Gently hold them, ensure there is something under their head, and do not restrain in any way- this can cause further injury.

Time the episode for medical sake, and be calm and soothing when they come out. Rub their back softly.
Trust me, there is nothing more terrifying than witnessing a tonic clonic, have heard all about it- you have my sympathy.
The exception to this, is being alert and alive one moment, and the next opening your eyes, flat on your back, to see loved ones' scared faces hovering from above.

My living situation is different than most epileptics. I live alone, and many of my seizures have gone unseen. Most of the time I pick myself back up and come to however later it is, slowly noticing the bumps and bruises, bitten tongue. Every time I open my refrigerator, I must take note of the cantaloupe sized dent in the door, something I have no recollection of. As a result, I'm not allowed to take stairs or showers, use machinery, enjoy past hobbies, etc, without someone being around. I abide by this when I'm feeling funky, that wisdom that is gained is you start to notice the signals, auras, feels, that predict an event.

In regards to cannibus, I wish that was a solution. At first taking one hit at night was seemingly helping, until the few times I got too high, and had a seizure. Now I avoid it mostly. My thoughts are, Marijuana has been hyper inflated as a cure all for seizure disorders. Just my opinion.

Now, the purpose of posting this novel, is to add to little known type of seizure.
I am highly intuitive, and from the start my theory has been, that decades of unchecked, treatment resistant depression has manifested into physiological symptoms. By venturing into alternative treatments, as cutting out a piece of my brain is a no go for me, I discovered non epileptic seizure disorder(PNES).
For me, it makes sense, any time I am overly emotional or stressed, having a panic attack, a seizure is almost guaranteed to follow. Heat does not have any effect on me, just upset.

Will leave you with this webinar. It is long but worth it. Have you and your lady watch, and see if it applies. It might just dictate her treatment options.
I wish you both well.
https://www.epilepsy.com/diagnosis/imitators-epilepsy/psychogenic-nonepileptic-seizures


--------------------

From all I may be, or have been before,
To mingle with the Universe, and feel
What I can ne’er express, yet cannot all conceal.


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